Happy Feet Home helps make the last days of terminally ill children worth living
Happy Feet Home (HFH) is a daytime center in Lokmanya Tilak Municipal General Hospital (Sion Hospital) founded by Mansi Shah and Abhishek Tatiya. HFH is unique. It is India’s first Children’s Hospice for terminally ill children who are suffering from diseases like cancer. HFH offers services like counseling, activities like painting and computers, and bereavement support. Children who are suffering life threatening diseases have little respite. Their minds and bodies are weakened by heavy doses of medicine, stressful chemotherapy and radiation sessions. Recently launched, they are currently on a fund-raising spree, you can do your bit by donating to their Indiegogo campaign here.
Nelson Vinod Moses from SocialStory interacted with Shah over email to talk about what motivated the founders to start HFH, reaction of family and friends, challenges faced, dealing with parents and how they plan to offer the services free of cost.
SS: Tell me a bit about the founders.
Shah: I have a Bachelors degree in Arts and a Diploma in Early Childhood Education and have worked at The Akanksha Foundation for eight years in various capacities. My last position at Akanksha was Manager of Social Leadership Program. I have worked as a General Manager for 3rd Circle (Emotional space) at ‘St. Jude India ChildCare Centres’. I have been on the advisory board of Arpan, an organization that works towards prevention and awareness towards Child Sexual Abuse. I’m also on the board of ‘Urja’, a shelter home for girls in need of care and protection.
Abhishek has a Bachelors degree in Commerce and an Advance Diploma in Business Finance. He has worked in the corporate sector for over 5 years for companies like ‘CRISIL’ and ‘Sunteck Realty’. He is a core member of a volunteer group called ‘Sing a Smile’.
SS: What was the motivation/inspiration to start Happy Feet Home (HFH)?
Shah: For people who know me since my school/college days I was somebody who will just have fun in life, go for movies, party, get married and have a good and regular life. I have one, but with a lot of difference. Once I took the plunge, I realized that I am here to stay.
When I first walked into the St. Jude Centre I was taken in by a pleasant shock. Never have I seen a place so beautifully maintained, a place so spic and span and so cheerful. This place kept children with masks. St. Jude provides shelter to children fighting cancer. I knew then that I wanted to get involved here in some way, never thought I would work here but I landed up doing that. At St. Jude I was responsible for the emotional space. I was to ensure that every child is happy and engaged. Tough job I say but I have seen children completely engrossed in solving a puzzle right after a severe chemotherapy, I have seen them forget their pain and their illness when they are a part of the activity; I have seen parents feel good every time they see their child laugh out during a game we would play. It is here where I realized how much it matters to keep children engaged and motivated while on treatment. I have seen children succumb to the illness and that would shake me up completely but I also always knew that what I did with the children did make a difference and it did matter.
SS: Did you’ll model HFH on any other hospice globally?
Shah: When we started working on setting up a children’s hospice we did a lot of online research on various children’s hospices around the world. We saw the way it has been set up and the kind of work that is carried on. We were quite impressed by the work of Richard’s House (richardhouse.org.uk) in London.
SS: Did you’ll do any user research before coming up with the idea? Do you follow any specific program to ensure that the children’s last days are peaceful and dignified?
Shah: After getting the idea, we spoke with doctors and social worker at Tata Memorial Hospital about the same and all of them reciprocated that there is a need and nothing like this exists in India so far. However, when we tried to look for the number of children who are declared incurable on a yearly basis, we couldn’t get any reliable number.
But it is estimated that every year about a million people are diagnosed with cancer. And if we include the other diseases like Aids, Thalassemia etc the number would be even higher than that. From our interactions with various doctors, we understood that there are thousands of children who would need hospice care.
SS: What was the reaction of your friends and family when you’ll decided to start HFH?
Shah: We have been extremely fortunate to get a very encouraging and positive response from everyone we spoke with in regard to the hospice. Barring a few, everybody said that it’s a great thing we are attempting. They would certainly ask us how we would deal with such kind of emotions. What we are very sure of is that we want to be there for the children and the families till the last moment. We want the death to affect us, we want to feel bad, and we do not want this to make us cold towards someone’s death. Only if it affects us, will we be able to do a good job of running the hospice.
SS: Do the founders/staff get attached to any of the children? How do you’ll deal with the fact that they may not be there tomorrow?
Shah: We haven’t started our operations yet but we will have a special focus on the training and well-being of the staff. On a regular basis the staff will sit together and share the emotions they are going through.
Also the operations are totally based on the services of the staff hence a lot of counseling will be provided to the staff.
SS: How do you help parents deal with the trauma?
Shah: Parents will be provided with bereavement support. There will be regular one on one, family and group counseling/therapy sessions.
SS: What are your biggest challenges? How are you dealing with them?
Shah: Currently, our biggest challenge is to collect the required funds. We are looking to raise about Rs 80 lakhs for the first year of operations which will include the setup cost along with the operational cost. To reach the target of Rs 80 lakhs, we are running a crowdfunding campaing on Indiegogo.com. We are also planning to hold a fundraising event. At the same time, we are promoting it aggressively on social media.
SS: What is the socio-economic background of your patients?
Shah: We are not going to have any restriction on who can avail the services of Happy Feet Home. We don’t want to decide that the child from a particular economic background would need this. This is for any children irrespective of their socio-economic background.
SS: Have you’ll broken even? How much and who has invested in HFH?
Shah: The services at Happy Feet Home will be free for all the beneficiaries including the parents. We are getting Happy Feet Home registered as a charitable trust.
So far we have been able to raise about Rs 3 lakh from various resources.
SS: What plans for the future?
Shah: We plan to learn at our every step. We are starting with a day care hospice and we aspire to start a shelter hospice where the children can stay with their parents. We are looking at building a lively, colorful and vibrant place which is safe for children to be children and enjoy their life.